The charity, Scope, which works to help children and families affected by disabilities, is currently campaigning for improvements to the Children and Families bill, which if you re a regular reader, is currently undergoing pre-legislative scrutiny. Scope Scope's new campaign called Keep Us Close, is pushing for better provision of local services for disabled children.
If you're interested in this subject, MumsNet have a Q&A session with the new Minister responsible for SEN reform, Edward Timpson on Tuesday so head over there to pose your question after you've read about Scope's Keep Us Close campaign in this article by campaigns officer, Tom Eldon, written exclusively for Special Needs Jungle.
Until recently, when I started working for Scope, I had very little understanding of the challenges that families with a disabled child face here in the UK. I’d just spent a year and a half working with an association of parents with disabled children in Mongolia, whose situation was almost unbelievably dire – surely things must be better here.
And to be fair, things are a lot better overall. But what I’ve found out in the past few weeks through national research and speaking to parents and support groups has both shocked me, and motivated me to get involved in fundamentally changing the system for the better.
If you’re reading this blog it’s likely you’ll already know what I’m about to say – that trying to get appropriate support and care for a child with special needs often stresses a family to breaking point. From the initial stage of getting an accurate diagnosis of one’s child’s impairments, through navigating the process that’s needed to get a statement of special needs (often required to get access to a suitable educational environment), to finding a school that meets their requirements, everyone I’ve been speaking to has been critical of the status quo. And often, even when these hurdles have been overcome, there are many more that remain; most families don’t live close to facilities and services that meet their needs, be it education, respite care, healthcare or even play groups and opportunities for children to socialise.
One mother I spoke to found local support to be so inadequate that she and another parent abandoned the state altogether and started up their own support service to provide advice and activities. Their charity has grown, and they now support the families of nearly 2,000 children, with some of them travelling as far as 50 miles to access their playgroups and meetings – but despite this clear demand they still struggle to raise funds. And these aren’t isolated incidents – time and again I hear the same story of stress and anxiety, of complicated processes and services that fail to meet families’ needs.
A recent Scope survey found that 6 out of 10 families with a disabled child aren’t able to access the services they need in their local area; only 1 in 10 told us that the process of getting local services was simple. Survey respondents’ children travelled an average of 4,300 miles to access services each year - that’s roughly the same as driving from Land’s End to John O’Groats. 7 times. It’s robbing families of their quality time, putting strain on relationships, and often adding a huge financial burden. Families are at breaking point, and the system needs a radical change on a structural level.
So how are we trying to help change all of this?
At the moment the Children and Families Bill is lumbering through pre-legislative scrutiny (as excellently documented here on Special Needs Jungle), providing an opportunity for us to reform a system that’s clearly failing huge numbers of people across the country. Scope have been campaigning for the inclusion of a ‘Provide Local Principle’ clause in the bill, which would:
- Ensure services in a local area are inclusive and accessible;
- Put a duty on local agencies to introduce new inclusive and accessible services if they don't exist in a local area.
This would mean that parents’ views, and their families’ needs,would become integral to the planning and delivery of local services, making councils work together in a joined-up way. Having this clause in the bill would guarantee, in law, that councils have to provide the services family need closer to home.
The campaign, Keep Us Close, has been really successful to date, with over 17,000 campaign postcards and emails taken at the time of writing. But we still need to push the issue harder – many of the responses we get from MPs are broadly positive but lack any real commitment to change things for the better.
If you have a minute to spare, please take our online campaign action and let your MP know that this issue is important to you – that the opportunity for reform that the Children and Families Bill provides mustn’t be squandered. There are hundreds of thousands of families across Britain who deserve better.
Right now we have a critical opportunity to feed into the content of the bill and improve the quality of life of hundreds of thousands of families across the country. We expect the bill to come into Parliament in the New Year, so please, let your MP know that you care about disabled children and their families.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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